“The times weren’t right, and I couldn’t talk about…” needing a wheelchair.

There are many people who get a wheelchair before it becomes a full-time necessity.

They get it as an optional disability accommodation; an option enabling them to more easily access places they otherwise couldn’t without great difficulty; an option saving them energy during long trips; an option helping them keep up with able-bodied people when they otherwise could not; an option improving their potentially-impaired quality of life. This is a very smart thing to do, I think.

I am not one of those people.

I’m in the other group, of people so stubborn-to-a-fault, so full of unintentional, internalized ableism we won’t even think about using an accommodation unless it becomes impossible to deny. Because this is, at its core, a fight with and denial of reality.

After noticing how much further my umbrella cane helped me walk, I was fine with learning to rely on a cane. And in the past, I did entertain the idea of a wheelchair because I thought it’d be a shame to miss out on things just because of an inability to walk and/or stand for very long. Then the reality that is myalgic encephalomyelitis caught up with me, and how disastrous the consequences would be for using my arms to propel myself. And who was I to decide that my family or friends were going to have to push me, just because I physically couldn’t, just because a wheelchair would have made things “easier”? It’s one thing if there isn’t a choice, but I couldn’t allow my mere “preferences” to involve other people to that extent. To avoid deconditioning, I felt if I could still walk at all then I needed to do it whenever possible, but without causing relapse. So you see, it’s not really having a wheelchair for occasional use that disturbs me, nor is it even needing one when I go out, like to doctors. It’s being wheelchair bound that scares me, which is what would need to happen before I ever broke down and got one.

Well.

It was a month ago today that I realized I had entered into a new level of disability. I’ve become unable to write (by hand) more than a few sentences, when I used to be able to write a letter or card. I cannot chat on instant messengers but a few times per month, when they used to be a vital part of my keeping connected with friends. My blog entries now take several hours, even days to type. My muscles have started to give out way more easily and more frequently than they ever have. All activities in general are much more limited.

It’s not that I purposely avoid these things to better my chance of feeling well later, like so many psychologists would have the world think about ME patients. No, it’s that even if I wanted to do them and just “pay the consequences later,” more often than not I simply couldn’t.

There are several disability scales out there, including some specific to the effects of particular diseases. For instance, I wouldn’t be able to accurately rate myself on a scale intended for MS patients. The easiest one for me to use is the Hummingbird Foundation’s M.E. Ability and Severity Scale. As of where I’m at right now–with 100% being fully recovered–I would be at 5% physical ability, 20% mental ability (thanks to olive leaf extract), and 10% for severity of overall symptoms. Of course I have days where I am worse than this, and thank God I still have days where I am better than this, but in general, that is where I’m at. And it’s all happened so quickly… I knew I would return to this point and then some, without treatment for these infections, but…

So perhaps it shouldn’t have come as so much of a surprise, when my mother and I had The Wheelchair Talk, today. For some with progressive diseases, as I mentioned earlier, getting a wheelchair to help you get around on bad days and outings isn’t too difficult to wrap your head around, especially if having more accommodations enhances your quality of life. But again, I’m not that person. I’m the one who refuses to buy into a convenience before it becomes necessity because damn it, if there’s any ability I have left, I. am going. to use it. and no disease is going to force me into a decision before I’ve decided it’s time to deal with it… Right?

It’s much easier to accept a mobility aid, or any accommodation, if you can still technically function without it, even at a reduced level. Then it isn’t so much I am being forced into this against my will as it is I’m doing the smart thing and using all available resources to manage my disability. Especially when the decision to accept the accommodation means forfeiting independence and becoming even more dependent on others. It took me six years before I could even say the words “I’m disabled” instead of “I’m on disability.”

But I’m at that point in any progressing illness where, even if you realize using mobility aids will allow you more accessibility, you still battle with yourself, for any number of reasons. In my case the reason is, this step just reaffirms how bad things have gotten.

I’m exhausting my treatment options one-by-one, nothing is working, I’m going downhill fast, and it’s just a very scary situation. Which I do plan to deal with gracefully, I hope, but dealing with something doesn’t take away the harsh facts, or the possibility of worse things to come. Even though I cannot stand for more than a few minutes, effectively restricting my trips out to places with available scooters or wheelchairs, the ones I’ve been needing to use for the past few months thus I’m effectively already wheelchair-bound…in my head, I don’t really have to identify with this level of illness until I decide to buy one. I might be bedbound because I have to lie down 95% of the time just to maintain stability, but I can still stand up for a few minutes, and those few minutes mean so much to me because I’m well aware there’s no guarantee I’ll always be able to do it. Honestly, it’s not like “I never thought this could happen to me,” but… Now it is.

The conversation with my mother happened after I wanted to go to the store a block up the road. I’ve been wanting to go for quite some time, but had been waiting until I thought I could somehow do it on my own… And that time came. But then I walked the 80 feet/24 metres to go tell her I was going to attempt getting dressed and such, and instead had to lie down. Silent tears soon followed. I couldn’t help but feel overwhelmed, because I knew this was it. If I wanted to at least savor my ability to sit up, we were going to have to go through with it. To my surprise, she must have been reading my mind, and was the first to bring it up:

Mother: …Why don’t we see about getting you a wheelchair?
Me: …Yeah.
Mother: No, really…
Me: I know. *smiles weakly* It’s just… When did this happen, you know?
Mother: Yeah… *sighs and looks away* Yeah.

And so, here we are. I suppose the next doctor visit I have, we’ll ask how to go about getting a wheelchair covered by my insurance. If they don’t, I might can get one on my own with my credit card, such as this modestly-priced one from Invacare. (The free shipping option is nice, and it also comes in red!) God will provide me with whatever I need, I know this much by now. I have the cane, the oxygen, the hospital bed, and so if it’s time for a wheelchair, too, then so be it. I know I’ll come to accept things, even if it’s not this exact moment.

I have no idea what’s going to happen next, if we’ll find a treatment breakthrough and I’ll start to get better, or if things will get worse, or maybe things will get worse but then get better… I don’t think I’m supposed to know. Whatever happens, this blog is my testimony, of someone living with severe M.E., an illness which on its own can disable or kill a person. And Lyme disease, and bartonellosis, they too can be disabling or fatal under the right circumstances. And yet somehow I keep on going… Honestly, with all that I have within me, I think it’s a bit of a miracle that I keep going at all, that I’m even still here to tell everyone about it. Perhaps in the future, I can look back on this entry and realize that I made it, that I improved. But even if I don’t, is that okay?

“And I’m praying that we will see
something there in between
then and there, that exceeds all we can dream”

a rainbow at night

[Edit: Five years later, and I am, indeed, able to look back on this entry and realize that I made it.
Lyrics by Flyleaf.]
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10 thoughts on ““The times weren’t right, and I couldn’t talk about…” needing a wheelchair.

  1. I use a wheelchair from time to time in the house. It sure beats crawling to the bathroom. My need for it is seldom, and it comes and goes, however, I use an office chair on wheels in the kitchen and that helps me every day. I highly recommend it.

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    1. These entries you’re commenting on are very old, from 2010. :) I got out of mine for about a year when treatment worked for a while, but I’m about to get back in one. Ironically I’m going through the same stages of acceptance with it. Perhaps even worse because this time there won’t be a “get back out.” But because of that I’m planning on getting an electric one this time, and that will be almost fun, when you consider how fast it goes in comparison to how fast I can go on my own, haha! Even typing that, I can see the change in the person I’ve become.

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  2. I don’t know what to say. I really…I really don’t. I wish I had something intelligent to say, besides that I want to hug you so bad through the computer screen. I don’t want to say “I’m sorry” because it’s cliche and I didn’t do it to you. I just…I hope that you have a treatment break-though. Because even though God has a plan, and I believe firmly He has a plan for you, you don’t deserve this. You ARE a warrior, you know? There is no way you could do this otherwise.

    I had a client at my job who inspired me even before I got Lyme. She had progressive MS, and she was bound to her chair and could not walk at all. She was one of the nicest most wonderful people I’ve ever known, and she always, always kept up hope. She told me once: “I pray to God for a miracle every single day.” She never lost faith. I’m not sure what the point of this story is. :/

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    1. I hate that feeling. :\ It’s like.. everything that you want to say to someone just sounds so dull and overused that it’s lost the meaning you really want it to have, and… Yeah. *hugs through screen* I understand.

      I know one thing’s for certain, and that’s.. if I hadn’t been growing with Him, I don’t think I could handle this. If I were the same person I used to be, I don’t think this would be happening, because I wouldn’t have the tools to cope and I’d crumble… Maybe if I stop growing as a spiritual being I won’t have anything else to advance to. DAMN THAT NIRVANA THING. TONS of people get stuck in a rut and go no where and repeat the same lessons, maybe I should try it out! Ahaha.

      Aww, I remember her. ♥ I had a sister who had MS, did you know? I think.. well… Isn’t there such a thing as loving God and having faith that everything will be fine, even if you’re dying? Because God loves us ALL and I promise you we will also ALL leave our physical bodies at some point! I think it’s worse for the people who are still living afterward.

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        1. Yes, I hate it too. Especially because you really want to find something that will help, or show that you care, but you can’t think of anything because the situation is so overwhelming.

          I feel very blessed to be an alcoholic. I know that sounds weird, but in becoming an alcoholic I found God, and God has been here with me through everything. I know He was with me before, but knowing it is such an amazing comfort.

          I also agree that this wouldn’t be happening if you didn’t have the coping skills. God never gives people things they can’t handle. Sometimes in my bad states, I think he’s made a mistake, and I tell him so. But He never does. He must think you are one of His strongest children, you know? Hahaha! Think of it this way: the more you learn, the closer you get to finishing your lessons! If you get stuck, you’ll have to do more unpleasant things than necessary. ;) Also, God would know you were faking.

          <3 I'm sorry about your sister who had MS. My uncle had MS….and he eventually died of blood cancer. My mom has said to me that she was happy he died, because he got to move on past all the suffering. I think it's much worse for them too! The only reason I didn't go hobble off some type of cliff during "the flu at the airport time" was because of my mom. XD;

          I……..I don't know…..

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  3. Oh, honey ;_____; Things have been bad, I know but…this post makes it obvious just how bad. I think the time is right for you to get a wheelchair, because things – occurences – only happen when we’re ready for them, and I think this revelation means you’re ready and it’s supposed to come in to your life.

    You’re always in my thoughts and prayers. You’re the strongest person I know, and I believe that you can look back on this entry in the future and know that you made it. *squeeze*
    (And now I can just see you zipping along on your wheelchair cackling madly and generally destroying the public peace whereever you are xD When one has a bright red wheelchair, one can’t resist becoming a bit of a hellion. )

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    1. Ahahahaha. The last part of that comment made me giggle wildly. The one advantage of not having to propel yourself is that you’ll have free hands, so I can prod things with my (soon-to-have-hummingbirds-on-it) cane from a distance if I’m feeling mischevious. Once in my life I have to use the “i’m disabled you can’t be mad at me” card!

      …I guess it is really obvious now, isn’t it? It’s so strange because, inside, I feel the same… But then I try to move and it’s like, ‘Huh, I could do that last week/month, but…’ I don’t think it’s fully hit me yet, but… You’re right. Things only happen when they’re supposed to, so if this is the next step then I just have to take it and see what happens. No matter what I know I have amazing loved ones like you. ♥

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